A Patient Remembers Compassion, Camaraderie In a Trial That Saved Her Life

A Patient Remembers Compassion, Camaraderie In a Trial That Saved Her Life

03.18.13 | By

One of the most rewarding aspects of the "Research in Your Backyard" events that I've attended throughout the country is the chance to meet amazing people from all walks of life. One such person is Judy Orem, who I had the pleasure to get to know during an event in the Pacific Northwest last year.

Judy Orem, an articulate, thoughtful Oregonian, will be the first to tell you that her participation in a clinical trial of a cancer medicine that saved her life was a fortunate experience. Not all trials turn out as well. Some are more challenging for patients than others. But her treatment during her trial and interaction with her fellow trial patients provide a snapshot into what patients who participate in the clinical testing of new medicines can expect.

Her story begins in 1995 when she was diagnosed with chronic myelogenous leukemia. By 1998, she learned that the medication she had been taking was no longer working and her chance of survival with a bone marrow transplant was no better than five percent due to her initial treatment.

She recalls thinking, "no way, no way" and wondered what to do next: "At that point, they gave me six months to live, but said that with massive chemo, I could maybe live two years. I would have been dead probably by 2000 even with the chemotherapy. But that would have been a miserable way to live."

The fact is, it's now 2013 and Judy Orem is still very much alive, aside from a scratchy throat caused by a common cold. She participated in a clinical trial of a new drug and remembers not only the exhilaration of getting better, but also the compassion of her clinician and the camaraderie that developed with her fellow trial patients.

She was convinced to proceed with the unknown of a Phase I clinical trial by her husband and by the instant rapport she developed with Dr. Brian Druker, her clinician.

"He promised me he would do everything he could to keep me alive during the trial," she said. "He really felt for his patients."

To keep them informed, Dr. Druker met monthly with his clinical trial patients over lunch. "We'd ask questions and he would educate us," Orem recalled. "Once, he had a couple of nurses come in to talk about fatigue and he had pharmacologists talk to us about alternative medicines."

Based on her experience, she rejects the charge of some skeptics that patients in clinical trials are guinea pigs: "If I was a guinea pig, I was a live guinea pig. I was treated as a human being with respect and I'm alive."

The bond among the patients in her trial was apparent when a television crew came out to interview them. The reporter let them talk and interact with one another for two hours, though, predictably, they were a tad disappointed when the story aired as a typically short broadcast news segment.

"We sat and we laughed and we cried tears - it was very, very emotional," she said. "We were all a family and Dr. Druker did that for us."

Orem recalled one trial patient who did not make it - she had been very ill. "Was it worth it for her?" she asked. "I think so. She said she had three good months with her grandchildren before she relapsed."

She urges potential trial patients to not be afraid of clinical trials and to thoughtfully explore and discuss the options available to them with their doctors and the trial clinicians. In addition to weighing the risks, and there are risks, "they also have to ask the question, 'If I don't do it, what happens?' she said. "I think people ought to have that choice."